Dystonia Living

Thursday, March 16, 2017

Overcoming fear for a better life

Fear is probably the single most damaging, debilitating, detrimental energy we have. It interferes with our well-being in every area of our life. We cannot thrive when we are controlled by fear because fear stresses our immune system and clouds our thinking. Facing fears may feel uncomfortable, but taking action allows the body to release the tension it has built up. Conquering fear could be the saving grace to our mental and physical health.

Keep this in mind.... our thoughts, plus an emotional charge, plus action, equals outcome. If the emotional charge is fear, we will procrastinate and not see opportunities in front of us; and even when we do, fear won't allow us to trust it. It paralyzes us. How we feel emotionally determines the action we take or don't take.

One of my favorite acronyms for FEAR is, “Face Everything and Rise.” Sadly, for too long I was afraid to face my dystonia (and significant weight gain) so I followed a different acronym for FEAR; “Forget Everything and Run.” This approach didn’t help matters at all. I spent many years deeply depressed and anxiety ridden, and drastically isolated from the world. When I began to face my fears and things I felt self-conscious about, my life began to change for the better.

When the topic of fear comes up, I often think of the movie, We Bought a Zoo, with Matt Damon. Damon’s character, ‘Benjamin Mee’, is having a conversation with his son about fear and courage. It was in the context of how he first met his wife, but it applies to anything in life where we have fear or apprehension. Damon’s character said, “Sometimes all you need is twenty seconds of insane courage. Just literally twenty seconds of just embarrassing bravery, and I promise you, something great will come of it.”

He’s right. Feel the fear, whatever it is, and do it anyway. It will quickly dissipate, allowing us to move forward with confidence. Bravery is not being without fear. Bravery is having fear and walking through it.

A student once asked his yogi master how he maintained such peace of mind and physical well-being. "Oh, my son”, the yogi smiled, “you only see the outside of my life. Inside my mind it is as if two powerful dogs are always waging war with each other." "Wow," said the student. "What do the dogs fight about?"

The Yogi answered, "One is always leading me to a better life; good health, strong energy, creativity, wonderful relationships, and constant joy and peace. The other is always leading me away from that wonderful place, to a horrible place that is its opposite. He has only one method, but it is a very powerful one. He leads me to fear. Once I am afraid, I cannot move. I am stuck and I can only spend my energy worrying and being upset, or trying to prevent what I am afraid of. This dog causes me much suffering."

"Tell me, Master, which dog most often wins?" The yogi sighed, paused, then smiled and replied, "Whichever one I feed."

Too many of us complicate our lives by feeding the wrong dog, preventing us from living a fulfilling life because we are afraid. Be assertive and push through fear so you live on your terms. If you miss somebody, call; if you want to see somebody, invite; if you want to be understood, explain. If you have questions, ask; if you don’t like something, say it; if you like something, state it. If you want something, ask for it. Live your life no matter what obstacles stand in your way!

Tom Seaman is a Certified Professional Life Coach in the area of health and wellness, and author of the book, Diagnosis Dystonia: Navigating the Journey, a comprehensive resource for anyone suffering with any life challenge. He is also a motivational speaker, chronic pain and dystonia awareness advocate, health blogger, and volunteers for the Dystonia Medical Research Foundation (DMRF) as a support group leader, for WEGO Health as a patient expert panelist, and is a member and writer for Chronic Illness Bloggers Network. To learn more about Tom’s coaching practice and get a copy of his book, visit www.tomseamancoaching.com. Follow him on Twitter @Dystoniabook1 and Instagram

Monday, March 6, 2017

Working through life challenges - Releasing the past

In my last blog, I wrote about the emotional pain of "victim mentality" when faced with a health or other life challenge. In this entry, I will share some ideas for getting out of that mindset. Mindset is a muscle, so it is important that we exercise it properly.

A big reason for our emotional pain is being stuck in the past; how life was before dystonia, or other health condition or life challenge. We need to find a way to release the past. It is not who we are anymore, no matter how hard we try. We can be whomever we want right now. We may not be the same person as before, and we have to learn to be okay with that, IF we want to be happy. We also need to be open to the possibility that we can be even better than before. I know how crazy this sounds, but Post Traumatic Growth is a very real and powerful thing.

By no means is 'letting go' as easy as I am making it sound. I completely understand that it is a process that unfolds at our own pace. It is something I have to work on every day. The more I work on it, the better I am able to release the past and embrace the me I am right now. I can't begin to tell you how liberating it is and how much better it makes me feel when I am able to do it.

I would like to say that I freely do whatever I want whenever I want, but that is not always the case. There are days when things are far too uncomfortable because of the pain and other symptoms of dystonia. Therefore, I do my best to live my life within the boundaries of my abilities and work hard to accept that I can’t always do everything I want, or some of the things I used to. If I don’t allow myself to accept the reality that life is different now, I will mentally torture myself and become a victim of circumstance. I did this for far too long and it resulted in so much pain. I had to learn to let it go, and as mentioned, I still have to work at it every day. Finding joy in whatever I do is where I try to put my focus, so the past does not determine my present or future happiness. I feel I have better accepted the challenges I live with and learned to ride the fluctuating waves that each day brings, but I am still a work in progress.

Every night I go to bed praying I will wake up with fewer symptoms than I had the previous day. If this does not happen, I am better at not fighting what I can’t change physically about myself in the moment, but it comes with constant practice over a long period of time, and I still falter. What I have learned is that I can only change how I respond to how I feel and do my best to be grateful for whatever I am able to do on that given day.

When we focus on the abilities we have now, acceptance follows, giving us greater peace of mind. By holding onto what once was, we trap ourselves in a vicious cycle of emotional pain.

The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.

- Elisabeth Kubler-Ross -

Monday, February 27, 2017

$5 Cure 4 Dystonia

Please help support a new initiative to find a cure for dystonia....$5Cure4Dystonia!! It takes only $5 to help me and hundreds of thousands of children and adults suffering with this awful disorder. Please go to www.5dollarcure.com and help today with your tax-deductible donation. 100% of all money raised will go towards research. Please share this with your family and friends so they can help too! Let's spread this like wildfire! Thank you very much for your help!

What is Dystonia?

Dystonia is a neurological movement disorder characterized by uncontrollable, involuntary muscle spasms and contractions, causing repetitive movements, twitching, twisting, and/or abnormal postures. Muscle contractions can be sustained or intermittent and sometimes include a tremor. Dystonia can affect any part of the body, causing varying degrees of disability and pain from mild to severe.

People often describe their affected muscles as feeling like tightropes. You will also hear people say it feels like the affected body part(s) is in a vice, being squeezed by a snake, their head feels like it is being pulled off or is the weight of a bowling ball, and/or their muscles pull, turn, twist, and tremor uncontrollably. The experience is similar to a charley horse that never goes away.

Let's end the suffering! Please join us and be part of the global effort to find a cure by going to www.5dollarcure.com!

Sunday, February 12, 2017

Overcoming victim mentality

When the pain and muscles contractions from dystonia were at their worst for me (see below), it significantly limited what I could do. For years I characterized dystonia as an evil intruder that ruined my life. What I could no longer do was my only focus, which caused great anger and depression. I was so bitter that I let myself become a victim. I was lost in a world of pain; a world I felt was out to get me.

Feeling like a victim is normal when diagnosed with any serious health condition, but it is not not just people with a health condition that play the victim role. People who look negatively on life's circumstances complain about everything from the weather, other people, their jobs... the list is endless. We have all done it, which is fine, but it is self-destructive if we remain in this state of mind. We become isolated, depressed, bitter, angry, and resentful. We mainly complain and rarely look for solutions to problems. To the victim, everything is always someone else's fault.

For the first several years with dystonia, this is exactly how I felt. I was miserable. I felt a deep sense of loss and was extremely frustrated, so I had a lot of negative self-talk. My anger and sadness made my dystonia worse because negative emotions cause increased muscle tension. I had to shift my thinking and focus on moving forward if I wanted to live a happier and healthier life (please see my next blog entry about releasing the past).

I had to get out of the “why me, poor me?” frame of mind if I wanted freedom from my mental anguish. Instead of asking, “why me?” I began asking, “why not me?”, “how can I learn to live with dystonia?”, and “how can dystonia help me learn and grow?" I am no better or worse than anyone else so if it happened to me, so be it. Maybe there was good reason for it. "Start viewing it this way", I told myself.

Plus, there was nothing I could do to reverse things so I needed to learn to accept it and find the lessons in it, even when I was in ridiculous pain and could barely function. Easier said than done, but awareness of this attitude is a start!

I try very hard not to, but I still find myself being a victim at times, so I am not immune to any of this whatsoever. I just work much harder now to be mindful of these tendencies. When things get tough, I do my best to tell myself, "although this is a difficult situation, I am going to make the very best of it." This shifts my focus to one that is solution oriented which always puts me in a better frame of mind.

Wednesday, February 1, 2017

Tips for better sleep

Ahhh… sleep!! It feels so good when we get it. Unfortunately, quality sleep is something that eludes many of us. It seems that more and more of us sleep less and less for countless reasons, and when we do sleep, it is not as rejuvenating as it could be. Rather than go into the reasons for why many of us do not sleep well, below are some tips for improving your sleep habits. Most of us already know what we can do to help us. It is just a matter of putting them to practice.

Before continuing, I want to mention that I fully understand and appreciate that with certain health conditions, especially pain, anxiety, and depression, that solid sleep can be near impossible. I lived this way for many years with a difficult health condition called dystonia. I know what sleepless nights are like all too well.

Make your bedroom more sleep friendly

Make your bedroom reflective of the value you place on sleep. Check your room for noise, light, temperature, and other distractions, including a partner’s sleep disruptions such as snoring. Keep your room temperature less than 70 degrees Fahrenheit. Use shades that darken the room (blackout blinds), a sleep mask to cover your eyes, earplugs, recordings of soothing sounds, and a fan or other device that creates white noise.

Make sure your bed allows enough room to stretch and turn comfortably. Experiment with different levels of mattress firmness, foam or egg crate toppers, and pillows that provide appropriate support. If you share your bed, make sure there is enough room for two. If you have children or pets, set boundaries for how often they can sleep with you or have them sleep in their own space.

Stick to a sleep schedule

Maintain a regular bedtime and wake time schedule. A regular wake time in the morning strengthens the circadian function and can help with sleep onset at night.

Create a bedtime ritual

Establish a regular, relaxing bedtime routine each night to tell your body it is time to wind down. This might include taking a warm bath or shower, reading a book, or listening to soothing music. Relaxing activities ease the transition from wakefulness to drowsiness.

Reserve your bed for sleeping and sex

Use your bedroom only for sleep and sex to strengthen the association between bed and sleep. If you only use your bed for sleep and sex, when you go to bed, your body gets a powerful cue: it’s time to either nod off or be romantic.

Pay attention to what you eat and drink

Don’t go to bed hungry or full. Also limit how much you drink before bed to prevent trips to the bathroom. Avoid nicotine, caffeine, and alcohol. The stimulating effects of nicotine and caffeine can wreak havoc on quality sleep, and even though alcohol might make you feel tired, it can disrupt sleep.

Include physical activity in your daily routine

Regular physical activity can help you fall asleep faster and enjoy deeper sleep. Find a time to exercise that works best for you. Shortly before bed is usually not the best time of day as it can cause you to be too energized to fall asleep.

Napping

If you need to make up for a few lost hours, opt for a daytime nap rather than sleeping late. This helps make up for lost hours without disturbing your sleep-wake cycle. I find that a good power nap during the day revitalizes me.

Boost melatonin production

Melatonin is a hormone in the brain that helps regulate other hormones and maintains the body’s circadian rhythm. When it is dark, our body produces more melatonin. When it is light, the production of melatonin drops. When it is time to go to bed, turn off your computer, cell phone, and television. Don’t read from a backlit device (such as an iPad). Read from something that requires a light source such as a bedside lamp. Use a low-wattage bulb so you can avoid bright lights. Light suppresses melatonin production and these devices can stimulate the mind rather than relax it. Some people find melatonin supplements to be helpful.

Increase light exposure during the day

In the morning, let sunlight hit your face. Try to take work breaks outside, exercise outside, and walk during the day instead of at night. Also, let as much light into your home/work space as possible. When sunlight hits our eyes, the optic nerve sends a message to the pineal gland in the brain that tells it to decrease its secretions of melatonin until the sun goes down again. The opposite happens with serotonin, a hormone connected with feelings of happiness and wakefulness. When we are exposed to sun, our brain increases serotonin production. When sunshine touches our skin, the body produces vitamin D, which helps us maintain serotonin levels.

When melatonin and serotonin production are properly balanced, we feel energized during the day and a slowing down during the dark hours. Some find vitamin D supplements helpful for maintaining this hormonal balance, especially during the colder months when we spend more time indoors.

I hope this information leads you to better sleep. Many of these things have significantly improved my quality of sleep. Of course, the type of pillow you use, your bed, sleeping partner, daily stressors, indoor/outdoor noise, etc., all play a factor, but this list is too long for the purposes of this article. If after trying all the above you still have trouble falling asleep, maintaining sleep, awaken earlier than you wish, don’t feel refreshed after sleep, or suffer from excessive sleepiness during the day, please consult your doctor.

Saturday, January 21, 2017

Self-empowerment tips for healthy living

When we are faced with a limiting health issue where performing "simple" everyday activities becomes a challenge, our self-confidence and self-worth can dwindle. This can happen with any health condition or injury, but is especially prevalent with a chronic health issue. It is always there to remind us that we have to work a lot harder to perform tasks that were once so easy. This can get downright exhausting and overwhelming to the point where we might feel much less of a person than we once were.

In my case, I live with a painful neurological disorder called dystonia. I have had it for over 15 years and it has altered the course of my life in many ways. Given the nature of this disorder where the main symptoms are involuntary body movements and chronic pain, it can feel like an outside force is controlling my body. This is very unsettling, which can lead to a sense of helplessness and a decreased feeling of competence. Those of us living with dystonia (and any other chronic condition) have to work very hard to combat these problems on a daily basis. Below are some ideas to help you feel more empowered.

Remember that you are the only one with unique knowledge about your condition and how it affects your life. You are the one who can and should make the major decisions about your life. Only you know how you feel at any given time, what you are capable of, and what your limitations are. Don’t allow feelings of guilt push you into doing something you know your body will pay for, either during or afterwards.

Be careful to not compare yourself to others. No one is better than you. We are all unique and everyone has lived a very different life. We cannot completely duplicate the success of another person because we all take different paths to get where we are. Concentrate on strengthening your own skills and abilities. Be proud of your accomplishments and acknowledge how well you are doing in the face of great challenges.

Prioritize. On your best days you may find you can do more things with relative ease. Other days, a single task might wipe you out for the rest of the day or even several days thereafter. Plan ahead so you can prepare yourself prior to an activity and rest time afterwards if necessary.

Be careful about being a people pleaser. It often means jeopardizing your health for the sake of others, an attribute that may have and may continue to contribute to your symptoms. Do what you can and know your limitations. Others can adapt to you.

Be sure to find doctors you can trust. This is often a difficult task. Dystonia and other conditions are often misunderstood, making it hard to find the right doctor who understands your specific needs, so it might take some shopping around. To assist in this process, educate yourself as much as possible about your condition so you are able to screen your health care team. I wasn’t educated nearly enough in the beginning and I paid the price because some of the doctors I saw didn't know what they were doing and made me worse.

Don’t forget that your doctor works for you. Don’t let their busy schedule force you out of the office before you feel he or she has met all your needs. Your doctor is there to serve you; not the other way around. Together, you and your doctor can map out the best plan for your care.

Take responsibility for your thoughts, feelings, and choices. We are responsible for how we feel about everything that goes on in our lives; not other people.

Advocate for yourself and for others. Learn as much as you can about your health condition so you can make the best choices for your personal well being. Share with others what you learn to help them make smart choices. It is also important to be educated so we understand and are comfortable with the different treatments our doctors propose. Advocate by talking to people about your health condition to raise awareness. Reach out and lend a helping hand to someone who is struggling, write a blog, articles for various online magazines, get involved with organizations and support groups, and get active on social media. Raising general awareness about your health conditon and directly helping others is a big part of personal healing and self-empowerment.

Take personal time for yourself, whether to relax or have fun. Don’t forget how important it is to let go and enjoy life. It is far healthier to focus on all you can do versus all the things you can’t do or choose not to do. Dwelling on problems can make you forget how to have fun. There is joy all around you and there are ways to let go of fear and anxiety, and other problems associated with any health condition.

If you are well enough, take a walk in the park, go to a movie, concert, play, or sporting event. Treat yourself to a massage or other way of pampering yourself. Remove toxic people from your life. Do whatever you can to create peace in your life. You deserve it!

Learn how to ask for help without guilt. We all need help. Let someone else take care of cleaning the house or shopping. Let friends or family members take care of your kids every now and then so you can get some rest. When you feel well enough, pay the favor forward.

Dystonia and most other chronic conditions are survivable. You can still have a quality life regardless of your symptoms. Do whatever it takes to make it work. You can get through the hard times and come out on top. Just keep in mind what’s really important in your life and then go for the fullest life possible. It’s yours to live, one day at a time.

Monday, January 2, 2017

Understanding and coping with anxiety

I think most of us would agree that anxiety is quite common among the dystonia population. It is not a feature or symptom of dystonia, but given the major changes that often take place in one’s life when dystonia intervenes, anxiety can become an issue. Fear not though, for it can be managed.

Dystonia is a very confusing health condition to live with. There are many unknowns about the present and future which can cause worry and fear. Also, looking and feeling different than the average person (and our former selves, sometimes to the point where we don’t recognize who we are anymore) can make us angry, self-conscious, and depressed; all of which are fuel for anxiety.

Further, if we have doctors and people close to us who don’t listen or understand what we are going through, or write us off as hypochondriacs, this can cause guilt and shame, adding to the internal chaos we already experience from the mental and physical pain. With all of this going on, it is no wonder anxiety is so common!

I know all too well what anxiety is like. It was so bad for me at one point that it took every ounce of courage to leave my house. One of my former triggers for anxiety and panic attacks was driving, even very close to my home. To read more about this and how I overcame it, please see my article in The Mighty.

So what exactly is anxiety?

Anxiety is the apprehension, uncertainty, and fear one feels when anticipating a threatening event or situation, whether the threat is real or imagined. It is often accompanied by restlessness, problems concentrating, muscle tension, and fatigue. Put simply, anxiety is an unpleasant state of inner turmoil. Panic attacks often accompany an anxious, stress filled life. You can read more about anxiety and panic attacks in my book, Diagnosis Dystonia: Navigating the Journey.

Anxiety is actually a normal, instinctive and automatic human emotion that everyone experiences at times. It is a temporary call to action to fight or flee to keep us safe in the face of danger. When worry and fear are constant, a person is caught in fight or flight mode, which can be crippling. The most seemingly harmless stimuli, thought, event, etc., can be overwhelming for this person, making it feel impossible for their brain to slow down so they can genuinely enjoy their life.

The key to switching out of an anxiety state is to fully experience and accept all the uncomfortable feelings, and allow time for them to pass. Let them come. Let yourself feel all of it. Breathe and let your rational mind enter. Speak to your anxious thoughts with that rational mind, understanding that these are just harmless thoughts that have no meaning other than what we choose to give them. Just let them come and let them go.

From personal experience, this is SO MUCH easier said than done which is why letting go needs to be a daily practice with steadfast dedication. Changing our mindset involves small, repeated steps. Each step builds on the one before it, and this takes time. Be okay with this. There is no rush. Remember that your mind has been doing what it has for a while and it will take time to unlearn its habits. Be patient.

A tool I find very helpful is called AWARE, an acronym for dealing with anxiety from the book, Anxiety Disorders and Phobias: A Cognitive Perspective, by Aaron Beck and Gary Emery.

A: Accept the anxiety. Welcome it. Don’t fight it. Replace your rejection, anger, and hatred of it with acceptance. By resisting, you are prolonging the unpleasantness of it. Instead, flow with it. Don’t make it responsible for how you think, feel, and act.

W: Watch and Wait. Look at your anxiety without judgment. It’s neither good nor bad. Become detached from it. Remind yourself that you are not your anxiety. The more you can separate yourself from the experience, the more you can view it as a third party observer.

Even though there is a powerful urge to run away to try and escape anxious situations, postpone that decision for a little bit. Stay in the situation. Don’t tell yourself you can’t leave. Keep that option open so you don’t feel trapped, but remember that you don’t need to run away to get relief. Let relief come to you.

A: Act with the anxiety. Act as if you aren’t anxious. Function with it. Slow down if you have to, but keep going. Breathe normally. If you run from the situation your anxiety will go down, but your fear will go up. If you stay, both your anxiety and your fear will eventually go down.

R: Repeat the steps. Continue to accept your anxiety, watch it, and act with it until it goes down to a comfortable level.

E: Expect the best. What we fear rarely happens. Recognize that a certain amount of anxiety is a normal part of life. Understanding this puts you in a good position to accept it if it comes again. You are familiar with it and know what to do with it.

The first several times you try this you might not notice much. Your anxiety may even get worse for a little while. Eventually, the more you practice, the greater your ability to harness the strength of your powerful mind and make it work more in your favor. You will learn that you will always have what it takes and that anxiety is a feeling that comes and goes, just like the weather.

Along with using the AWARE strategy above, coping statements can be very helpful. Check them out at The Anxiety Network. It is also helpful to use affirmations which are described in more detail in this article. You can also take affirmations a step further by asking yourself questions or making declarative statements. This added focus makes them more real and practical. For example, instead of the standard way of stating an affirmation such as, "I am strong", ask, "why am I strong?" or say, "I am strong because..." and list as many things you can think of. Other examples include, "what do I find joyful?" or, "what I find joyful about (blank) is..."; "why am I blessed with great friends?" or, "my friends bless my life in the following ways..." You can write this all out on paper or just let your mind run with it.

Don't ever forget that you are a fighter. You are brave, strong, and resilient, and you have everything you need inside you to deal with anything that might stand in your way!